Stuck in the labyrinth
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It's almost three months since I first went to A&E with dizziness and palpitations, fearing I was having a heart attack. Since then I have seen about six GPs (it's the nature of London doctors that you rarely see the same one) and have had blood tests and a 24-hour ECG which produced nothing of note. Second A&E visit (this time with numbness in left-hand side and nausea, fearing stroke) said I likely had labyrinthitis and gave me prochlorperazine and suggested reading up on CBT. At follow-up GP visit doctor said it should be over in a few weeks, and (again) refused to refer me/MRI etc. Seventy-five days have now passed: the strange sensations are still here, and the doctor today said that probably meant it was Benign Paroxysmal Positioning Vertigo instead, but that it wouldn't explain the heart issues or the muscle weakness in the legs or the numbness on the tongue or various other weird sensations. I have another appointment with a GP who specialises in ENT next week (each appointment takes two weeks to get and lasts 7 minutes) and am very much hoping for something more substantial!
I feel as though I am stuck in going round GPs, none of whom know that much about it or think it is very serious, and want me to just sit it out. Perhaps that's fair enough in the underresourced NHS. Meantime it's driving me round the bend. If anyone has any advice on how to get through the GP gatekeepers to, say, a neuro-otologist at UCLH, I'd love to hear from you. Plus does anyone else have those symptoms: muscle weakness, twitches and nerve pain in legs, pins and needles or strange-feeling tongue?
1 like, 21 replies
LynQ charlie49460
Posted
If you have BPPV, the drugs pescribed for labyrinthitis won't work according to my specialist. You can get it fixed by finding a physiotherapist who can carry out the Epley manoeuver. It does not hurt and fixes the prolem in 90% of cases. They test that you really have BPPV by triggering it and watching the way your eyes react. Usually it is one sided (either right or left) and you only feel the vertigo/dizziness wen you turn your head in one direction. I hav had it and had it fixed seeral times-it dies tend to recur but sometimes not for a long time. Good luck!
charlie49460 LynQ
Posted
charlie49460
Posted
The last few days I have been trying to get results, or at least work out who will deliver them to me (private and NHS don't seem to work at all well together), and have therefore been pretty awful. Perhaps worst bit is the private MRI centre (I went to London Imaging Centre, who were very efficient) give you a CD-Rom with your images on. All I can tell you is *don't look*! By Day 4, frustrated with not being told if I have anything serious or not, I made the mistake of looking and googling what I thought I saw, which put me in a tailspin. I tried to walk off the resulting depression/anxiety and of course bumped into a former colleague in the park while in a cmplete state. Not good. I have now recovered by telling myself that, in case I didn't know, I am not a radiologist and cannot interpret scans.
Meantime, the weird symptoms continue: nerve-twitching tremor and spasms all over my body, particularly noticeable at night, especially in my arms and in my head, where there is a sort of trembling-brain sensation. Sometimes this will suddenly stop as I'm dozing off and then there is a great surprising silence that jolts me awake.
This afternoon the consultant is supposed to write to tell me what the MRI found or didn't. Will let you know what happens, fingers crossed.